Munson Healthcare in Traverse City brings pediatric specialists from top hospitals to complement care for Northern Michigan’s littlest critically ill patients.
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It started with a fall down the stairs and a broken arm. A trip to the hospital, some X-rays and eventually a cast got 9-year-old Ariah House on the path to healing her broken bone. But a few days later, the little girl wasn’t herself. She was having trouble walking, then standing. She started wetting the bed. Something was definitely wrong—beyond just a broken arm.
A trip to Helen DeVos Children’s Hospital revealed blood on her cerebellum and began an exhausting odyssey of monitoring, EEGs and a spinal tap, as well as trips in and out of the hospital.
After finally receiving a rare diagnosis—an autoimmune disorder of the nervous system—Ariah was not only able to get the help she needed, but she’ll also be treated close to home.
Instead of making the monthly 3.5-hour trip to DeVos, Ariah will receive her care from both her DeVos team and Munson Medical Center staff, thanks to an inspired partnership between Munson Hospital and downstate institutions such as University of Michigan and Helen DeVos. The partnership involves cooperation with Munson Healthcare and the sharing of downstate specialists—in particular pediatric specialists—who regularly visit patients in Northern Michigan.
Reaching Ariah’s diagnosis was no easy feat. Her grandmother, Diane House, who had adopted Ariah and her siblings when the child was 4, was beside herself after their initial hospital visit; she felt perhaps the little girl’s deteriorating condition was connected to her fall, but a definitive diagnosis eluded them.
In just a few weeks, Ariah ended up in a wheelchair. She couldn’t draw, write or color; her speech began to slur. Her medical team believed she was battling an autoimmune disease of some sort, but couldn’t determine precisely which one.
After numerous trips home, in and out of a rehab hospital and back to DeVos, Ariah was eventually diagnosed with opsoclonus-myoclonus-ataxia syndrome, or OMAS. It’s an autoimmune disorder of the nervous system characterized by new movements of the limbs and eyes, abnormal behaviors, sleep dysregulation and difficulty talking. OMAS is typically concurrent with cancer, and it’s incredibly rare—worldwide, there are only 1,700 currently known patients.
Although the two situations were unrelated, Ariah’s fall and broken arm happened to coincide with the onset of the disease, and her family credits it with putting her in front of skilled medical personnel that were able to help pursue a diagnosis.
With aggressive intravenous immunoglobulin and steroid treatments, Ariah’s condition has stabilized. However, the treatment required to help her improve will require monthly in-patient two-night stays over the next 18 months for her to receive the IV/IG fluids and steroids she needs.
That’s where the partnership between Munson Hospital and downstate institutions comes into play.
A host of doctors including pediatric urologists, geneticists, cardiologists and sleep specialists make their way north once or twice a month for regularly scheduled clinics to see patients in need of care. Working in coordination with pediatricians and primary care doctors, these specialists provide critical intervention or follow-up care, allowing for local treatment and/or recovery at home instead of extended hospital stays far away.
The partnership facilitates continuity of care and the reasurance of a steady, unchanging medical team; even if a child is treated downstate, he or she can remain under the watchful eye of a specialist who can see them at regular intervals once they are home recovering.
“Being treated or being able to recover from an illness or medical issue in your own community is always less traumatic,” explains Joan Rikli, women’s and children’s service line executive director for Munson Healthcare. “This program allows not only convenience, but access to an extraordinarily high level of care and cutting-edge treatment.”
The collaboration is seamless, with pediatricians referring patients for specialized care. For example, a young child with cancer would have a visiting pediatric oncologist directing their care with the cooperation of the child’s pediatrician. Under the guidance of the advising specialist, the child would be able to receive their chemotherapy in the friendly environment of the pediatric floor at Munson Hospital, close to home.
“This sharing of resources changes the lives of children needing treatment in Northern Michigan,” explains Rikli. “And by treating our young patients locally, downstate hospitals can not only share their expert resources, but they can expand accessibility of care by freeing up capacity for other children in critical need.”
For Ariah, the program has added caregivers and doctors to her team that can treat her locally, giving her and her family much-needed respite from the distance and travel for the lifesaving treatment her rare condition would typically require. “The staff here in Traverse City have been wonderful, every bit as wonderful as the ones we’ve seen around the state,” Ariah’s grandmother says. With a clear and local treatment plan, Ariah’s family has high hopes that she’ll eventually reach complete remission.
For more information on how your child can access Munson’s specialty care teams, consult with your family pediatrician or visit munsonhealthcare.org.